Wellness Journal | Psychogenic Non-Epileptic Seizures

Psychogenic Non-Epileptic Seizures in Conversion Disorder

I just got off the phone with my spouse. I asked him where he was and why he wasn't here when I called out for him. He told me that he had given me a kiss and said he was going to the bank. I don't remember that happening whatsoever.

My memory is pretty shot today and it scares me. I have to learn how to cope better with this. It's frightening to know that my mind is escaping me, but I had an epiphany.

So many of us that develop all the components of Conversion Disorder go on to have very debilitating lives. It makes me wonder... once the seizures start... These seizures are considered non-epileptic and it isn't supposed to be terminal, but I think it is. What if the seizures are doing more damage to my brain?

Yesterday I had another seizure episode that lasted a little more than half an hour. Bill has been taking  some video here and there of my episodes that I will share in the future, but for now I will retell last night's episode here.

I was getting upset about the medical marijuana bill. I have known for a very long time that my illness would not be on the list, but seeing it in black and white did a number on me. I was distraught. My arm immediately began having tremors, then my neck starting in with the tics that look like big jerks, and my ring finger started going nuts. I was trying to will my body to stop, but it wouldn't listen and I was getting frustrated and then I just shut down.

It was like I understood every single thing that was happening, but I couldn't speak or move any way I wanted. My eyes rolled and fluttered and it was so embarrassing to be out in public that way that I will not venture out again very soon. But beyond the embarrassment, I wasn't sure it was going to stop. The sheer pain that a seizure involves is debilitating. My entire body is cramped and my muscles hurt and my head is still hurting badly from a migraine that just won't quit. All light hurts my eyes and can trigger an episode. I was wearing my sunglasses yesterday, but it didn't do much good. I was at the Texas State Capital for a meeting for patients about medical marijuana. I somehow managed with Bill's help to make it to parking lot. I did make it and I am so very grateful to both Bill and the universe for seeing me through it. It's time for a wheelchair and a shower seat. 

I'm was going to stop taking my oil altogether, but I don't think I will be doing that anymore. I am going to continue taking the light dose I'm on. I can't continue to have these seizures. I believe these seizures are doing more damage to my brain every single time I have one even if western medicine doesn't say so just yet. I see people in my support groups. The ones that have seizures fair worse than the ones that don't and I believe this is the reason for it. Today I have pretty bad memory loss. To completely forget that Bill told me goodbye? To not even be able to recall a smidge of it? No, thank you, universe! This is not how I wish to live. I will continue on my cannabis medication. I'm a believer and I will never stray!!

Wellness Journal | Psychogenic Dystonia

There is no rhyme or reason when I get like this. My body is not my own. I am tired and frustrated and sick and it is a never ending cycle sometimes. Sometimes I can see my way out, but right now I'm so frazzled.

I have to give up my medicine for the next week and I'm crying right now because it's going to be so hard. I've been experiencing horrible dystonia all week with sharp, piercing pains in my legs. It makes me cry out in my sleep at night. I am slowly losing my mobility. I have to use the handicapped carts at the grocery store. My tremors are worse tonight, not only in my arms, but in my legs, too. This is what happened last time I had a MAJOR episode that lasted for over a week.

So, I estimated how long it took between stopping my medicine last time and the reoccurrence of symptoms. It was five days. My neurology appointment in Houston is next week. Last time I went I only stopped taking my oil for a day. I want them to see me without it. I want it videotaped as I'm sure it will be. I want my illness to be well documented. I want them to see how much better I do on cannabis oil than without.

There are times when I still feel so alone. I have met some people online that have what I have, but it doesn't make me feel better to know them. It makes me sad for all of us. It makes me sad that so little is known about Conversion Disorder. The UK is reclassifying this disorder as a physical disorder next year and I'm glad. Maybe more doctors will take what we suffer into account. There's just not enough research into a disorder that's been around since before Freud's time.

I guess what would make me feel not so alone would be if there would be cannabis oil studies done on Conversion Disorder. Heck, even to know one other person that consumed to compare notes on what is the very best way to consume to help our symptoms would be so awesome and would make me feel less alone.

I know that my road is hard. There is very little research and very little people get completely better. I'm hoping for a happy medium. I want to manage my disorder as best as I can and enjoy my life as much as I can for whatever it is---MOST DAYS, but this moment is just not one of them.

I know I will prevail. I just need rest and relaxation and laughter. I need love and I'm happy to say that I have that in spades around here! I adore my man, my children and our life together. It's what gets me through all the tough times, it's what I hold most dear and it's what fuels me to do what I do. Passion and life is what it's all about.

Whew. I just smiled. Feels great!

Research | Functional Neurological Disorder Diagnosis Acceptance

Dear, Readers! First off, I would like to apologize that I haven't been writing blog posts for my "31 Days to Free Your Mind about Cannabis" series. I've been having some hard health days lately and I'm just not able to keep up. The stress of trying isn't helping either. I am committed to completing the project, but it will take me quite a bit of time to catch up and I'm going to do it slowly so it can be done correctly. :)

I have been diagnosed with Psychogenic Movement Disorder by three different neurologists, and, until today, I did not believe it. There isn't much research on this disorder in the U.S., but the world's leading expert, Dr. Mark Edwards, is in the UK and that's where all research on it stems from. In the UK, Psychogenic Movement Disorder is classified as Functional Neurological Disorder or Conversion Disorder. I prefer the term, Functional Neurological Disorder, over Psychogenic, because after just a bit of research, I discovered that it is actually a physical disorder, not a psychological one. While watching the following videos I started to believe that Functional Neurological Disorder is my correct diagnosis. Take a look and see why.

Holly's Conversion Disorder Fight, 5 min.

This video shows that the symptoms are very real. Health experts cannot explain FND fully.

Second Opinion | Conversion Disorder, 26 min.

Listen to the neurologist's explanation of how this is diagnosed and

"...the differences between neurology and psychology are becoming increasingly blurred."

After watching this video I looked up the definition to further my education.

What is Functional Neurological Disorder?

It is important to note here that the terms, "Functional Neurological Disorder" and "Conversion Disorder" are used primarily in the UK where the world's leading expert resides. This leaves many confused on their diagnosis and struggling to find where they fit in.  They individually mean different things, however, they are all labels for the same disorder.

Functional Neurological Disorder provides an umbrella term for a variety of symptoms of apparent neurological origin but which current models struggle to explain psychologically or organically.  Presentation may be similar to a wide range of other neurological conditions.  FND/CD can be as debilitating as Parkinson’s disease and MS and have many similar symptoms.  The most common misconception is that patients are in control of some or all of their symptoms.  The patient does not consciously produce functional symptoms.   A patient with conscious control of their symptoms has a different diagnosis such as Feigning, Malingering, or Munchausen Syndrome.

Functional Neurological Disorder can present with any motor or sensory symptoms in the body including:

• Chronic Pain
• Non-Epileptic Seizures
• Speech Problems
• Involuntary Movements
• Paralysis/Weakness
• Headaches/Migraines
• Bladder/Bowel Changes
• Cognitive Changes
• Visual Changes
• Sensory Symptoms
• Sleep Disturbances
• Gait/Balance Changes

Given the occurrence of these medically unexplained symptoms in patients with organic brain injury, spinal injury, post-anesthesia and post-viral illnesses, the modern term moves away from psychodynamic theory and provides a useful label for what is a complex and little understood disorder. [Source]

 What is Psychogenic Movement Disorder?

To better explain this disorder, I find it pertinent to add this information from the U.S.

Psychogenic movement is an unwanted muscle movement such as a spasm or tremor that is caused by an underlying psychological condition. Psychogenic movement can involve any part of the body and resemble the same muscle movements that occur with a biological condition or structural abnormality. Most psychogenic movement is involuntary—done without being consciously initiated by the individual. Psychogenic movement may develop as part of a conversion disorder (in which a psychological event causes physical symptoms with no known medical cause). It also may result from a somatoform disorder (characterized predominantly by multi-system symptoms that are associated with distress and/or dysfunction), factitious disorder (an illness that simulates symptoms for psychological reasons), or malingering (not characterized as a psychiatric disorder but where illness is pretended as a way to achieve a secondary goal such as the acquisition of drugs or disability benefits). Unlike movement disorders caused by biological or structural conditions, psychogenic movement disorders commonly develop suddenly, progress rapidly to maximum severity, may increase in intensity, and come and go with complete or partial remissions.  The movement may be less when the person is distracted, and the severity of symptoms varies among individuals.  The course of the psychological condition may be short-lived or lead to chronic disability.  

Psychogenic movement is uncommon before the age of 10 years. In children, the dominant limb is most often affected, while adults most frequently see movement in the nondominant limb. 

Psychogenic movement disorders include: 

Psychogenic tremor (also called functional tremor) can appear as any form of tremor movement. Characteristics may vary but generally include sudden onset and remission, increased incidence with stress, change in tremor direction and/or body part affected, and greatly decreased or disappearing tremor activity when the person is being distracted. Many individuals with psychogenic tremor have a conversion disorder. 

Psychogenic dystonia involves involuntary muscle contractions that cause slow, repetitive movements or abnormal postures that are often severely painful. Onset may be abrupt or appear as part of a recurring attack. Psychogenic dystonia typically involves fixed postures, particularly from the start, whereas dystonia caused by a muscle or structural abnormality tends to involve more mobility and be action induced.Psychogenic myoclonus refers to sudden, involuntary muscle contractions (twitches) or jerking of a muscle or group of muscles that are caused by a psychological condition. Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. Increased startle or startle-like movements are frequent. Psychogenic myoclonus may occur spontaneously or be generated by an action or reflex. The twitching cannot be controlled by the person experiencing it. 

Psychogenic parkinsonism involves rigid movements that are extremely slow and often associated with a great sense of effort and rapid onset of severe fatigue. Individuals with psychogenic parkinsonism may also have tremor. Symptoms are usually seen on both sides of the body. 

Psychogenic gait disturbances feature unusual patterns of stance and gait. Individuals may stagger or veer from side to side when walking and appear to be losing their balance, but only rarely fall. Sudden knee buckling without falling is common. [Source]

The Research Process...

My brain was going overtime after watching the videos and reading the symptom list and definitions. The first video was shocking. The young lady had shaky voice issues just like me and, though her symptoms were more extreme than mine, I noticed that the twisting motions were the same. Her diagnosis was the same as mine. The second video explained more to me how a doctor actually comes to a diagnosis and I began to think about why it was that doctors were having such a hard time finding out what was wrong. Why weren't the tests conclusive? Why weren't medical tests like EEGs and MRIs showing problems when patients were obviously not faking it? According to the statistics, psychogenic movement disorder is the most common movement disorder in the spectrum of movement disorders with 2-3% of the world's population diagnosed as psychogenic. That means that movement disorder specialists see this type of movement more than any other movement disorder. That means that they must know by now what to look for. It was interesting to hear in the second video what differentiates the tremor in psychogenic movement disorder from a Parkinson's tremor. After watching the video, I knew that I believed I the legitimacy of my medical diagnosis.

I looked online and found that the facts presented in the videos were mirrored by other stories and accounts. I found a Functional Neurological Disorder/Conversion Disorder/fndhope.org group on FB and over 1,000 people discussing their diagnosis. Some of them didn't believe the diagnosis and some of them did. They all experience similar mysterious symptoms, but not all of their disorders present the same. Some of them have just one psychogenic component of the disorder like psychogenic epilepsy while some have multiple areas of concern. Some are attempting to heal themselves with EDMR, a PTSD psychological technique, to access the initial trauma that started their illness. Others focus on their physical symptoms and see occupational therapists to help them relearn how to use their bodies. Some say that their symptoms started in childhood and that they have family members that have Functional Neurological Disorder as well. This last part is particularly interesting both for the fact that this can't be a just a mental illness and for the fact that it can be genetic. That this happens in families also sets my mind at ease about this diagnosis since my recently estranged sister has the same disorder.

I noticed during my research on different types of neurological disorders that almost every condition has a mental illness component. Parkinson's, Huntington's, Lyme disease, fibromyalgia and epilepsy all list depression or anxiety as a symptom. I find it safe to say that there is much more medical research that needs to be done on this disorder. When functional neurological disorder patients hear that this disorder is caused by psychiatric trauma, they automatically discount it because they know that they are not making up their symptoms. Some patients have never even experienced any trauma and, therefore, don't believe their diagnosis.

Neurology and psychology are blurred in FND...

One thing that is abundantly clear is that all functional neurological disorder patients are all suffering and they are all upset with the way the medical community has classified the disorder as a mental illness. There is research coming out of the UK from the University of Cambridge that says that when an organic dystonia is present that the brain does something abnormal in one direction. The psychogenic brain is abnormal, too, but in the opposite direction of the organic disorder. This proves that Functional Neurological Disorder is indeed a neurological disorder, instead of a mental illness.

I had heard that I was crazy from doctors before. The first time I heard that my symptoms were in my head was in 2002 after my auto accident with an 18 wheeler. The back doctor told me that he didn't understand why I was in so much pain. I had numerous shots in my back, but still needed vidodin for the pain. After completing a dye test that showed that I had bad disks, I stopped seeing doctors except once a year for pain meds. Then, again, years later when I saw a gastro doctor for a vomiting problem that lasted over a year (it later resolved itself for no apparent reason) they told me that they didn't know what was wrong with me. So, I was fed up with doctors telling me that my symptoms were in my head. I thought I was just seeing stupid doctors, so I changed doctors every time.

I completely understand why anyone that receives this diagnosis wants to refute their doctor's findings. Most doctors are scientist type personalities and are missing a sensitivity chip. If patients were told from neurologists, "All neurological disorders have a component of mental illness and this one is not any different. You have a mysterious neurological illness that may or may not be caused by previous trauma. I can help you with medications, but PTSD therapies and occupational therapy have shown great results in your disorder," then that would make more of an impact.

All neurologists across the world agree that the quicker you can get this diagnosed and the quicker you get into treatment the more likely that Functional Neurological Disorder can be cured, but that happens infrequently. Most patients have reoccurring psychogenic illnesses for the rest of their lives. The disorder cannot be cured and most patients are using prescription medications and psychological therapies to control their symptoms.

Everything happens for a reason...

One more thing to note... After receiving my first diagnosis over a year ago, I researched this topic and found Dr. Jankovic, but forgot about him. A year later, as I was about to give up, I remembered only that he was a leading movement disorder specialist. I saw him two weeks ago and his diagnosis was psychogenic movement disorder. He, too, is missing a sensitivity chip, but not as much as some of the other neurologists. I left his office disappointed and ready to give up on all western medicine doctors. If I hadn't seen Holly's video and heard her story, then I may have gone the rest of my life disbelieving my correct diagnosis. 

Everything happens for a reason. A year ago I wasn't meant to understand, but after watching Holly's video I have hope. Thank you, Holly, for being brave enough to share your story. I will be forever grateful. :)

Holly's Conversion Disorder Follow-up Video, 6 min.

Read about CC's story